My Life with Crohn's

With hindsight being 20/20, my Crohn's flares actually started in 2005, but I went undiagnosed until 2010.  During that time I wasn't in pain, just an upset stomach from time to time.  The long and the short of it is that when I was vacationing in Ireland and became sick.  Something I hadn't felt before.  When I returned home to Germany, I spent the next week in the hospital, and it just so happened it was my birthday.  Fast-forward 5 years later; I moved to the United States to start the rest of my life with my husband, David.  Wouldn't you know he gets a short notice tasking to deploy to Afghanistan, just a few months after I moved to be with him.  Here I am in a new country with no friends, don't really know my in-laws, a brand new empty house, and a Boxer puppy.  I tried to make the best of it.  I had some of my German friends and family visit me, which was great, and very needed.  Now it is 6 months later and I have a 104-degree fever.  I didn't know what was going on and had been sick for days and very weak.  So there I was all alone trying to figure things out, but wasn't able to get any real help.

I didn't have a primary care doctor, and had no idea what my health insurance covered or how it worked.  Here I am, in terrible pain and totally overwhelmed and confused.  Once I found a primary care doctor that was willing to see me right away, he was amazed that I was still walking; since I had a fever of 104 degrees.  He told me to go to the ER.  Once again I am totally overwhelmed, as I had no idea where the hospital was located.  My Doctor wanted to get an ambulance for me, but my German stubbornness arose, and instead I plugged the address of the local hospital into my GPS and drove there myself.  When I look back, I shouldn't have driven, as it was just too dangerous.  At the ER, they immediately thought it was my appendix.  After a couple of tests, they narrowed it down to Crohn's instead.  I was released from the ER with a note saying suspected Crohn's disease, and to follow-up with my primary care doctor and to find a GI doctor.  As English is not my native language, I was lost, literally lost in translation.  It is quite frustrating when you have no idea what the words mean.  My English was respectable at that time, but I wasn't proficient in medical terminology.

I was never really sick, so it couldn't be something bad, but I was so weak and I didn't like the feeling.  When my doctor told me I had Crohn's disease, I said, "What? What do I have?"  Those were my first questions when I was diagnosed in August, 2010.  Little did I realize the changes that were about to change my life.

Next, I found a GI doctor who worked with my insurance, and he confirmed what the hospital and my primary care doctor had suspected.  I thought German hospitals and insurance companies had a lot of paperwork.  Boy was I wrong, as I was introduced to American hospitals and health insurances.  I didn't realize that you need a referral for everything, and that you need to see your primary care doctor first.  After a bill of $300, I learned, and quickly called the insurance company and primary care doctor before making another appointment.

I still remember when I told my Mother-in-law, that I have Crohn's disease.  She hugged me and said, "You are a fighter and have David and us."  I still had no idea what it meant to have Crohn's.  I had never heard of this disease.  What I did know was that now I was taking a bunch of pills and started a liquid diet to ease the pain.  Up to this point, I hadn't told my husband that I was so sick.  He was in Afghanistan; a place where I couldn't bother him.  When he called the day after I was diagnosed, I left him know that I had Crohn's.  Being who he is, he immediately researched Crohn's and has been very supportive on my road to remission.

Obviously, I decided to do my own research.  My GI doctor prescribed me steroids and Lialda.  I took the maximum doses, which made my breakfast and dinner very colorful.  I started to feel a little better, but I wasn't able to eat a lot.  Eating gave me pain and discomfort.  I was so bloated, so I just didn't eat and became weaker.  My husband and I were married in the States ,but we also wanted to get married in Germany.  We planned a Fall wedding for the end of September, after his deployment.  Yes, I am a lucky girl!  I was able to have two big weddings within a year.  I purchased my wedding dress in July, and when I went for the final fitting, in mid-September, my dress was too big on me.  I had lost 20 pounds in just over a month.

 

I left for Germany before David arrived home.  His deployment dates changed like the weather.  He finally returned home and had to turn right around and fly back to Germany.  I still remember the first time seeing each other after 8 months.  He didn't recognize me, as I was 25 pounds lighter.  I am 5'8", and weighed 127 pounds on my wedding day.  People could tell that I had been sick.  Unfortunately, I lost more weight after my last fitting and my wedding dress was loose.  My Godmother made it work.  She just sewed me into my dress.

Fast forward to being back in the United States.  I had another appointment with my GI doctors, who recommended filling out a daily food journal. That process would help me to determine which foods were good for me and which were bad.  It worked.  I found out that lactose wasn't good for me.  It was my first big food change.  Unfortunately, it wasn't enough and ended up going back on steroids.  In total, I was on steroids for 12 months.  Needless to say, I had several bad side effects as most people would have after taking steroids for a year with almost no break.  My side effects were thinning and dullness of my hair, my skin was dry, and I had no energy.

Months went by and I felt a little better, but I was also taking my meds.  My doctor weaned me off of my steroids and reduced the dose of Lialda.  I was still very bloated and my pain was still there.  The journal indicated that my stomach reaction was more severe when I was eating dairy, gluten, and wheat.  I am German, and our staples our bread and cheese.  So I had to give it up.  I can honestly say that was a major benefit.

My success with health would not last.  Almost exactly a year after being diagnosed with Crohn's, I was misdiagnosed with a kidney stone.  My kidney grew to 4 times its size, and I was within weeks of losing it.  I finally received the proper diagnosis and had to have surgery.  I was able to keep my kidney, but to this day, my kidney is still swollen and will never be its normal size.

Wouldn't you know it?  I spent my Christmas in a hospital room recovering.  I could fill you full of details of the who, what, when, why, and how of that situation, but this is my Crohn's story.  Just recently I was diagnosed with an overactive bladder.  Isn't it enough that you need to poop seven times a day!  Now I can't even sleep through the night without going to pee.

Now I am 4 years in remission and drug free.  The reason for this, I believe is my healthy lifestyle.  There is no cheating on foods I can't have and I am taking proper supplements, super antioxidants, exercising, and have reduced my stress level.  When you look through my blog, you will find more posts about my lifestyle.  Everybody reacts differently, so I cannot recommend you to live my lifestyle, but maybe it is worth a try.  I would be happy to hear your stories.

I want to say Thank You to my biggest supporter, my husband David.  He is my Hero!

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